My daughter had a colectomy five days ago....

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Mitzi in GA
Regular Member


Date Joined May 2008
Total Posts : 23
   Posted 6/11/2008 11:10 PM (GMT -6)   
I had been on the Ulcerative Colitis board for several weeks since my 23 year old daughter was diagnosed with UC about six weeks ago.  She's been hospitalized for almost four weeks now for insertion of a PICC line for feeding and rehydration.  After all the usual drugs, including one infusion of Remicade, there was no change.  After her blood count was dangerously low and she was found to have air and fluid in her colon, she was rushed into surgery last Saturday morning.  How the blood count had gotten that low and the colon so distended and in danger of rupturing without a surgical consult is another story.
 
She was put into ICU post-operatively because of some areas of lung collapse and probably pneumonia. There was a positive blood test for a possible DVT.  She is still on feeding tubes but at last out of ICU...hopefully no DVTs.  They are starting her on clear fluids tomorrow.  She is still coughing and sounds raspy.  What a horrible horrible time this poor girl has had these past few weeks.  I only hope that the rest of her recovery is uneventful and that the pain will finally become bearable without meds.  I also hope that she can come to terms of this very sudden change in her life. 
 
I decided to come on over here since this board is now the place for her.  When she recovers I'm sure she will start posting on her own.
 

Post Edited (Mitzi'sMom in GA) : 6/12/2008 1:50:26 PM (GMT-6)


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5692
   Posted 6/12/2008 6:56 AM (GMT -6)   
That's what we call a fast and furious case of UC. It's happened to many although I hate it when it happens to children. You might also want to visit www.j-pouch.org There are some teens there and some parents of teens. They have an ostomy and a k-pouch discussion board there as well. Hopefully now with her toxic colon gone she will recovery quickly.

Sue
dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


Lew1201
Regular Member


Date Joined Mar 2007
Total Posts : 111
   Posted 6/12/2008 1:37 PM (GMT -6)   
I am so sorry!  My son had step 1 of the J-pouch surgery on April 18th and although he's dealing with the ileostomy OK, he has had nothing but other problems, probably due to the fact that he had been on Remicade, 6MP and Prednisone prior to surgery.  We are trying to figure out what's going on, but his gastroenterologist doesn't ever call back (I guess he figures it's not his problem).  Will she have the J-pouch eventually?  She'll be OK, my son seems to handle things much better than I do, but I am guessing it's harder with girls than guys.  Hang in there.  I can totally feel your pain and my prayers are with you!!!!

Mother of 18 year old son
Ileostomy on April 18, 2008
 


JsMom
Regular Member


Date Joined Jul 2006
Total Posts : 57
   Posted 6/24/2008 11:08 AM (GMT -6)   
So glad to hear your daughter is recovering. It breaks my heart to hear about anyone suffering in the throws of this disease. IBD can be so merciless.

My son, at 8 years, did develop DVT after 2 lengthy hosp stays and was readmitted into ICU again, too frail and in too much pain to stand but still had to be lifted out of bed and set on the bedside toilet chair every hour or so to cramp and poop out 200-400ml of blood at a time. His diagnosis at this time was UC. Had every test avail. Finally 6 months after the DVT, after many months on 6mp and pred failed again, we opted for complete removal of colon and rectum. We also went against every GI and surgeon's recommendation and refused j-pouch. Post surgery pathology reports on his colon and rectum indicated diagnosis as still UC, all previous scopes yielded UC diagnosis, his illium was clear. Then 3 months after final surgery, he started to get cramps, lose his appetite and energy. Test revealed his illium was inflamed and the diagnosis was changed now to Crohn's. Now he's on remicade and feeling better than he has in many years. We had hoped to avoid Remicade by having the surgery because of the risks, esp to pediatric patients, esp boys. But our son's disease is an extreme case. Your daughter's may not be.

When my husband and I were in the hospital with our son, I read and re-read J-pouch.org and healingwell, and every place we could find to get information on how people were handing j-pouches vs how others were managing with permanent ileostomies. We didn't consider Crohn's much because we were always being reassusred it was UC. It helped to have everyone, even those who had even a remote experience to ours, chime in. It gave us a lot of info to weigh. We decided the safer route for our son and the best way to end his misery was permanent ileostomy and focus on keeping him happy. We are so glad we did. With Crohn's, j-pouch is not recommended, all the ilium that goes into creating the j-pouch must be removed and short bowel syndrome can result.

There are a lot of differences between the state of mind of a 23 year old young woman and a 9 year old boy. But my boy is happy, he is able to have all the playdates he can handle, he enjoys sleepovers now, (he never could before) and even swimming parties. And the ostomy bag is the least (truly, the least) of our concerns. It's maintenance is like maintaining anything else in life. Healthy people blow dry their hair, apply make-up, shave, right? Dealing with an ostomy appliance takes less time than any of those things. One learns how to manage it much quicker than you think.

This may not be your daughters' road, she may respond well to first line treatment. But if it is, at least you can take comfort that it would be manageable.

Take care and keep giving us good news.
JsMom

Son, age 9, diagnosed with UC age 4, no relief or at best temporary relief from conventional meds, probiotics, SCD, colectomy with perm. ileostomy 2007. Diagnosed with Crohn's 3/08. Currently on Remicade, fish oil supplements, daily multivitamin, Digestive Advantage chron's colitis formula (1 week and counting, still has watery output 2 weeks now and counting).


Mitzi in GA
Regular Member


Date Joined May 2008
Total Posts : 23
   Posted 6/24/2008 11:34 AM (GMT -6)   
My daughter is two and a half post surgical with step one of a j-pouch.  She is home and still is very uncomfortable. She is taking Percocet but thinking fondly of her Dilaudid injections.  She claims she can't concentrate because of the pain, is glad to be home with her family, but desperately misses that Dilaudid.  It seems that she is just too fond of the drug and I hope she can acclimate herself to the Percocet, which cannot compare. 
 
She is crying frequently, thinking herself disgusting and abnormal.  I try and tell her that within six months, the J-pouch surgery will fix this.  I understand from other people telling us, that if she had been in a more healthy state and not having had the surgery done when she was sick, weak, dehyrated, anemic and with many systems on the verge of shutting down, she would not be so sick post-operatively.
She has trouble sleeping, which the Ambien helps somewhat.  But I'm hoping that this too shall pass and when she really starts healing she will come to grips about what happened to her life.
 
I hope that all who opt for surgery, whether elective or on an emergency basis, such as we had to, be permitted a second chance at life!! yeah

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 6/24/2008 8:01 PM (GMT -6)   
this may sound awful, but i dont think that she should be just always thinking, it's only temporay and i don't have to have this awful thing forever. It is only temporay that is true, but it will make it much easier on her if she just comes to terms with it and accpets it. I promise that once she starts feelign better she will forget the thing is there most of the time. and she will be so busy doing all the things she couldnt' do before that the bag will be the least of her worries!

ME!
Regular Member


Date Joined Aug 2007
Total Posts : 185
   Posted 6/25/2008 8:17 PM (GMT -6)   
It's a very hard surgery and with her being so sick she's been thru a big trama. And to be in pain it's very hard emotionally. I had my entire colon removed Oct 07. My pelvic floor function was good so they were able to reattach everything w/o me having a bag or j-pouch.

I was in a lot of pain after the surgery and was very depressed. My small intestines would spasm when I'd eat. I had a perscription for xanax so I took one when I'd eat and that took care of the spasming. After a few months the intestines healed up and stopped spasming.

Now I am very healthy and can eat whatever I want and go to the bathroom normally.

Once your daughter gets thru this she'll feel so much better. She needs hope and encouragement that it WILL get better. Sending (((HUGS))) to your daughter.

BTW, I live in GA too. :)
Control is an illusion. The only control we have is our response to people and situations. - Kim Martin


Mitzi in GA
Regular Member


Date Joined May 2008
Total Posts : 23
   Posted 6/25/2008 9:21 PM (GMT -6)   
I'm going to the doctor on Friday, ME, and I'll ask her about Xanax...maybe it'll help the blues and let me sleep better and deal with the pain.

You were fortunate that you were able to get the whole procedure done at once. I'm just looking forward to getting my strength back and going back in to do it all again! Thanks for the hugs and good wishes.

I'm in Gwinnett...
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